PMG Conference 2019

Becoming differently disabled and learning to listen to the experts

Mark Wilson OBE

02 October 2018

The opening presentation at the PMG Conference 2018 was given by Mark Wilson OBE, and it was such a huge hit, that we asked Mark if we could publish it.

Hi everyone and thank you for your welcome. My name is Mark Wilson, I’m a very proud Scouser, an even more proud Evertonian, sitting up here on a stage in Manchester and, as a certain fella called John Bishop once said in a similar situation, what could possibly go wrong!!

Hopefully nothing too serious, because I think I have the best job here today. I’m made up to have this chance to say thank you. Thank you to everyone here at conference and your many colleagues up and down the country who, each day, change lives for the better, often without ever really realising that’s what they are doing.

What am I talking about exactly? I’m talking about a part of your job that in my view has in the past gone under the radar. I called this bit of a chat Becoming Differently Disabled and Learning to Listen to the experts because, after a very long time as a no legged, one armed guy walking on tin legs and wearing a very old-fashioned wooden arm, it suddenly dawned on me that I had started to become “differently disabled”. This came as something of a surprise to be honest. It kind of snuck up on me with no warning because, bizarrely I know, I’d spent about 45 years mostly living in reasonable harmony with my disability.

I was lucky, very lucky. My disability is a congenital one. Nobody knew why I arrived like I did, and it must have been a hell of a shock to my mum and dad who, in 1956, hadn’t had the benefit of warning scans.

We (my gorgeous wife of nearly twelve years, Gill, and I) are big fans of Call the Midwife; those episodes covering the thalidomide years - I’m not thalidomide by the way, I’m too old - were a bit scary as we saw the dramatised experiences of parents, with the open windows in the delivery room on a very cold night. Incredible television and very emotional. It made me think hard about what my parents went through, but that’s as far as it got, because my mum in particular would never talk about my early years, ever.

Quite a change from today when only recently, on the 32A into Warrington, a lady sitting by the wheelchair bay conducted a long, loud and amazingly personal conversation with her Bessie on her mobile which could best be described as “gynaecological”, including reference to some “tong like” instruments that, until then, I had innocently, and quite happily, thought to be something you used when cooking ribeye steak on the hob......anyway I digress.

So, despite what for many was of course a bit of a shock arrival, and some interesting and challenging childhood years, I was mostly at one with my tin leg situation, and didn’t really hanker after anything much. I lie........ I always wanted to be Duncan Ferguson, a heroic Everton centre forward. Apart from that I of course knew I was disabled, and was quite happy to chat about it and its impact as asked.

And, strangely, most of my work colleagues now tell me that they rarely saw me as “disabled” which in hindsight was a bit weird, because I walked with what OTs describe as a “sideways gait” and frequently squeaked and smelt of WD40. The WD40 had never been a problem until my late teens when a mate told me that girls were not known to be drawn to WD40, preferring something less garage-like, which was when I added Old Spice to my aerosol collection. That didn’t seem to improve things, but there’s a whole different story there.....

My point is, and I promise you there is a point here somewhere, that I and a lot of folk around me didn’t really see me as disabled until my first foray into the world of manual wheelchairs. Only then did I apparently become “disabled”. Gill only recently told me that one of the first conversations we had included me explaining that I had to throw my wheelchair into the boot of the car, and until then I’d not really seen myself as very disabled......which for a guy with three stumps was, well, a bit strange I agree.

Looking back there were hints that I was going to be very surprised when age related disability caught up with me. At 18 years old I had one of many new sets of tin legs made. For a technical reason, which I now understand to be referred to as “a monumental cock-up”, one tin leg was, in effect, an inch shorter than the other.

A prosthetist standing in for my normal and much trusted guy was taken aback that I was put out by the situation, when I tried to explain that all my trousers including, I may add, several pairs of incredibly sexy flairs, wouldn’t fit correctly. He suggested that I “should be grateful to be able to walk”, to which I clearly remember summoning up a rather grand repost - I didn’t live to walk, but walked to live.

The effect was immediately ruined because my mother (yes, she still came with me to the tin leg hospital even though I was a “man”) announced that what I said was all very well but some of those trousers came from M&S and were not cheap......sigh.

So even at 18 I was focusing on very practical stuff, and the disability was very much a part of me and who I was.

I went on to hold down a fairly stressful job in the public sector in a career that saw me lead commands from 500-1200 staff, controlling budgets of around £20m plus a year, and working with some outstanding senior civil servants in a tough and often horribly political environment.

Quite a lot happened in those years. Everton won a few things in the mid-eighties then nowt for a long time. I travelled all over the world, worked hard.......and the flairs didn’t work, until 2004 when, after two years of trying to ask her out via email - I’m just such a cool dude - I met then married Gill, also a Blue of course.

But, and I think I’m back to the point here, in my mid-forties I became Differently Disabled.

I couldn’t manage the walking with tin legs that weighed a stone and a half. My back was threatening to give up the ghost. And on one football away day in Sheffield I couldn’t make the walk back to the car, AND we got beat. Not great.

At this moment, my best mate’s mum, an OT, took me to one side and persuaded me to get a manual one-arm drive wheelchair to use whilst I was still wearing all three artificial limbs, thus helping to ease the walking struggle when distances were involved.

The chair arrived, and my mum promptly hid it in the garage under blankets. She hated it, having fought all her life to keep me walking. She hissed at me “you’ve given up now then...” when actually this was the start of me accepting...ish.....that things needed to change.

But I listened to the expert and used the chair on my travels – it was something called a Carter & Jennings I think, with a metal “scissor” one arm drive system underneath the seat, and it weighed about 80lbs !!

I really knew things were getting bad when I had to start using the chair in work, and that’s when people I’d worked with for ages began to see me differently. Not horribly, just “differently”. I reacted to this. Became stubborn about what needed to follow because clearly this getting older thing was threatening to, you know, make me “disabled”.

But then a second intervention from a quite brilliant multi-disciplinary OT team in Warrington brought years of patient, careful advice that allowed me to hold down my job, cope better at home, and even accept a horrendous Thora Hird style stairlift - also hated by my mother who always said it was useless, until her own age-related disabilities saw her use it to take the laundry upstairs when she thought no-one was looking!

I suddenly found that a lifetime of disability was leading to changes that I never expected. I really didn’t see it all coming. But thankfully others did and, once I’d edged the stubborn independent streak out of the picture (a little) and let the professionals in, things got a whole lot better. I listened to people who understood the strain I was putting on my one pretty decent digit, my arm.

I hated the idea of a through ceiling lift but, after gentle and canny persuasion from a particularly determined OT, supported by my wife and daughter Rachel, the ceiling got ripped up and the lift arrived.

My remaining resistance was to call it “Godzilla”, but it was a crucial element that enabled me to handle life.

And then the real life-changing bit of becoming Differently Disabled. In the space of one week I took early retirement at 54 ending a 35-year career, stopped wearing all my limbs, gave up driving and, thanks to the amazingly clever, patient, dogged, and effective advice from a brilliant wheelchair services team in Warrington, made what was for me a huge leap into the unknown - the world of the powerchair.

This had taken a lot of persuasion. I stupidly had always seen the electric wheelchair as a sign that you had reached the premier league of disability and were, you know, REALLY DISABLED. It was kind of a line not to be crossed unless you wanted everyone to know you only got let out of the Home on Saturdays and should be addressed in a loud patronising voice and called “son” whilst being tapped on the head. Of course I was wrong.

You see, I was used to “leading”, travelling on planes to far-away places, and the world of disability was an accepted part of my life, but it wasn’t my whole life. Somehow the thought of becoming a powerchair user changed everything. It didn’t help that I had once actually tried out an electric wheelchair, hired whilst on holiday in Tenerife, based on the principle that nobody from home would ever see me in it; a bit like the girls in work who giggled about going topless on the beach when abroad as they would never be caught out, then meeting their nextdoor neighbour on the beach whilst getting the perfect tan!

My experience was not exactly of being caught, but was just as off putting.

Along with Joe, my wheelchair hand cycle using mate, I wandered into Los Cristianos for an early dinner. We ended up in a slightly hilly area full of cafes with pictures of the food on the end table, meant to excite your palette.

Now this hired chair had one of the control arms and a joystick box which slid out from the chair for you to get closer to the table. My speed setting was of course set to 5 - top power - because after twenty minutes or so I’d decided I was an expert user. I approached a row of four tables-for-two to look at the food pictures, and to get closer I pulled the stiff control arm out of the socket thing. I started to lose my grip of it, whilst somehow pushing the joystick full on and the result was truly catastrophic!! The control arm lodged itself between my left tin leg and the underneath of the table top and wouldn’t budge. The power was jammed on as I struggled to move my also jammed tin leg. The tables started to move - all four of them together - down the slope. Joe was convulsed with laughter and totally useless, despite my desperate and embarrassed pleas for help.

The waiter was transfixed, watching the horror unfold. I was looking around me for the giant hole to appear into which I could dive and hide. I was using bad words in the general direction of my mate. Very bad words. And then the tables, laid out for dinner, started to shake and salt ‘n pepper dispensers started to dance off the tables and were rolling down the slope towards the beach. The waiter had by now woken up from his shock and had reached the end of the tables trying desperately to catch the salt and pepper pots like a juggler. People in the Chinese next door were watching intently, thinking this was some kind of “street entertainment” and probably that I might start singing any second!

The dancing tables only stopped when they reached the wall and by then I’d pushed my tin leg belt down,released the jammed joystick and everything went quiet. Joe did a couple of turns of the hand cycle and cautiously approached, looked at the food picture, and said in a too loud voice “nope, don’t like anything here, let’s try the next one”

So much for a quiet, anonymous “trial run” of the hugely disabled-like electric wheelchair, and it nearly stopped me from seeing sense until several years later.

The thing was I didn’t “get” wheelchair use. But I was eventually gently persuaded that, unless I got my posture sorted, my bad back was going to return with a vengeance. I had never thought that stumps of different sizes need not only exactly the right type of cushion but also the right setup on a powerchair, the right seat angles, the right position for the control arm so my by now iffy shoulder wasn’t damaged any further, and the correct lumbar support. Most of all, I didn’t “get” the difference the powerchair was going to make, but others did.

The team at my local wheelchair service understood what I hadn’t. That yes I was disabled, of course I was, but now age and latterly a successfully sorted bit of kidney cancer, with another bit of me removed, meant that I was becoming differently disabled in ways I might find hard to handle.

I was persuaded to become a powerchair user by skilled and clever people who knew that independent mobility would be the key to my particular journey. That I had to change and be enabled to do that with a bit of dignity, and be supported to develop an acceptance that stubborn pride came second to sitting properly without my tin legs or arm on, and discover the freedom and amazing independence of the modern powerchair.

I now travel all over the country in this, the last of the Salsa R1s, which suits me very well. I travel a great deal to facilitate my volunteering on several charities’ national strategy boards, and am heavily into supporting volunteer engagement and development.

I have acquired a sad knowledge of train types, and sit on groups aimed at improving access to public transport, the rail network in particular. And, because there were people like you around to teach me that becoming Differently Disabled was indeed a journey with ways to cope, I am now actually MORE independent than I ever was.

My health has had a few dodgy moments recently, and bad hips from walking too long on those heavy tin legs means I need continued support to keep my posture in my chair as it should be, and to keep me mobile - not just travelling but in doing things like transferring where the experts’ advice has eased problems.

You, and colleagues like you, have changed my life by seeing what was taking me a long time to spot. Your awareness of the impact of age-related issues around existing disability is something that I suspect you may sometimes take for granted. Please don’t take anything you do for granted. What you may see as just doing your job, in an almost everyday fashion, will change lives, extend and create independence in ways that will often surprise those for whom becoming Differently Disabled is a bit of a shock.

So thank you for changing lives and opening doors.

Photography by Jonathan Rourke

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